Treatment for MS-Part 2

While no damage to the reproductive system or the fetus has been observed, these drugs are not recommended if a woman is pregnant or considering pregnancy during her treatment period. Male patients considering certain long-term treatments should discuss options for family planning with their doctor.

Other treatments are sometimes used to try to slow MS disease progression when other therapies have been ineffective. Such treatments are approved by the FDA for other illnesses, but not specifically for the treatment of MS. These include intravenous immunoglobulin (IVIg) therapy, methotrexate, azathioprine (Imuran®), and cyclophosphamide (Cytoxan®).

Six Approved Long-Term Treatments for MS
Drug Type Side Effects How Administered Notes
Betaseron Interferon beta-1b* (immune system modulator with antiviral properties)  Flu-like symptoms, injection-site skin reaction, blood count and liver test abnormalities  250 micrograms taken via subcutaneous injections every other day Side effects may be prevented and/or managed effectively through various treatment strategies; side effect problems are usually temporary.
Avonex Interferon beta-1a* (immune system modulator with antiviral properties) Flu-like symptoms and headache 30 micrograms taken via weekly intermuscular injections Side effects may be prevented and/or managed effectively through various treatment strategies; side effect problems are usually temporary.
Rebif Interferon beta-1a* (immune system modulator with antiviral properties) Flu-like symptoms, injection-site skin reaction, blood count and liver test abnormalities  44 micrograms taken via subcutaneous injections three times weekly Side effects may be prevented and/or managed effectively through various treatment strategies; side effect problems are usually temporary.
Copaxone Synthetic chain of four amino acids found in myelin (immune system modulator that blocks attacks on myelin) Injection-site skin reaction as well as an occasional systemic reaction - occurring at least once in approximately 10 percent of those tested  20 milligrams taken via daily subcutaneous injections Systemic reactions occur about five to 15 minutes following an injection and may include anxiety, flushing, chest tightness, dizziness, palpitations, and/or shortness of breath. Usually lasting for only a few minutes, these symptoms do not require specific treatment and have no long-term negative effects.
Tysabri Humanized monoclonal antibody (inhibits adhesion molecules; thought to prevent damaging immune cells from crossing the blood-brain barrier) Headache, fatigue, depression, joint pain, abdominal discomfort, and infection
IV infusion every four weeks Risk of infection (including pneumonia) was the most common serious adverse event during the studies (occurring in a small percentage of patients). The TOUCH Prescribing Program monitors patients for signs of PML, an often-fatal viral infection of the brain, which occurred in a total of three patients taking Tysabri in combination with Avonex.  
Novantrone Antineoplastic agent (immune system modulator and suppressor) Usually well tolerated; side effects include nausea, thinning hair, loss of menstrual periods, bladder infections, and mouth sores; additionally, urine and whites of the eyes may turn a bluish color temporarily IV infusion once every 3 months (for two to three years maximum) Novantrone carries the risk of cardiotoxicity (heart damage) and may not be given beyond two or three years. People undergoing treatment must have regular testing for cardiotoxicity, white blood cell counts, and liver function. Novantrone was studied in combination with large IV doses of steroids. Concurrently, many physicians often use it in combination with one of the interferons or Copaxone.

Additional information about interferons: Some individuals develop neutralizing antibodies (NABs) to the interferons (Avonex, Betaseron, and Rebif), but their impact on the effectiveness of these medications has not been established. Many continue to do well on these drugs despite the presence of NABs. Others may have sub-optimal results even without NABs present.

The MS Council and the American Academy of Neurology have concluded that the higher-dosed interferons are likely to be more effective than lower-dosed interferons. Several factors, however, must be considered when selecting one of these drugs, and this decision must be made on an individual basis under the guidance of a qualified physician.

Treating Exacerbations with Steroids
Most people with MS experience exacerbations (or MS attacks) which often last from one to three months. Acute physical symptoms and neurological signs must be present for at least 24-to- 48 hours, without any signs of infection or fever, before the treating physician may consider it to be a true relapse.

A pseudoexacerbation is a temporary worsening of symptoms, without actual myelin inflammation or damage, which is brought on by external influences — such as infection, exhaustion, heat, depression, or stress. Checking for a fever is important, since even a minor infection can cause old symptoms to reappear. Urinary tract infection (UTI) is the most common illness to cause a pseudoexacerbation. People with "heat-sensitive" MS should avoid hot tubs, saunas, or other situations that can raise the body's temperature. These too can cause a temporary increase in symptoms.

Exacerbations are usually treated with a high-dose, short-term course of powerful steroids (corticosteroids). The goals are to (1) reduce the severity and duration of the relapse by decreasing inflammation, and (2) potentially minimize any permanent damage resulting from the attack. Steroid treatments are often given by IV injection (intravenously), which injects the drug directly into the bloodstream for quick action. In the past, this could only be done in a hospital setting, but now this treatment may be performed in the comfort of one's home.

Long-term use of steroids is not generally recommended. They can cause many side effects when given over a long period of time and may have no effect on the long-term progression of MS.

[Heather3418]

This information was gathered from the MSAA web site.

[Rena705]

Like I said before Heather you are a godsend...this information is invaluable to anyone new to this site and to the people who have been here a while like me but are not aware how these drugs work and I thank you!

Lots of Hugs,

Rena705

[PlateletGal]

There is also the treatment I'm on for CFS (I also have a very high ANA titer --- 1:640). The Marshall Protocol has been successfully treating and possibly curing people with sarcoidosis and autoimmune diseases. It is a research protocol, but the medications are not research meds and any physician can prescribe it. In fact, I had two physicians recommend it for me. There is one member on the protocol that I know of right now who has MS. She's already listing improvements in her progress notes. I'm also healing... my POTS is better and I no longer have an intolerance to gluten and/or chemical sensitivities.

[Heather3418]

Sometimes it can confuse those on the MS Forum to be bombarded with info about other disorders.  Although we talk about other disorders on this forum all the time.  But you have posted this very thing so many times, I have lost count.  

I am very happy that you are getting the treatment you need for your CFS.  

These two posts of mine are dsigned to discuss treatment for MS only, not suggesting any treatment for those with CFS.  I rarely would say this, but please PlateletGal, hold back some of the comments on CFS.  We have all read them numberous times in your posts.   I am trying to help those WITH MS and those with the possibility of MS, to understand what drugs are out there.  

This is an MS Forum.  There IS a forum for CFS.  I have found that the information you keep posting to be more of a confusion.  (Other's can make their own judgements if they are also confused by your information, but I personally find it confusing.)  Not a personal attack, just a request.

Let's try to keep THIS post for comments about MS or comments about the period of diagnosis and it's treatments.  People going through the diagnosis period have so much confusion in their lives as it is, without adding to their burdens.  

Thank you, Heather

[Rena705]

I believe that this Forum is for helping the people out there with MS.  If there is information coming in from people who are suffering from other diseases that is not related to MS it is only going to confuse our Forum members.  Just a note as to my own case...I find that I can only deal with a few choice things at a time and anything that is thrown at me from left field puts me in a conundrum that I just can't deal with and I tend to shut down. As I tell my Husband when he throws something at me from left field, "I do not compute".  It makes me very frustrated and I think I have enough frustration in my life.  

When I opened this post after PlateletGal added her post I felt very frustrated as to what this was all about...I posted a note to Heather previous to PlateletGal's post stating that the information was invaluable to someone like me who has not yet dealt with the MS meds.  

I have to agree with Heather PlateletGal, we need to stick to one subject...this just really frustrated me when I read it.

Hugs,

Rena705

[PlateletGal]

What you guys are failing to understand is that the MP has MS listed as one of their conditions that they treat AND that they are successfully treating autoimmune conditions. I think you also don't realize that CFS can be as disabling as MS and that I share many of the symptoms as MS patients. My physicians even thought I had MS at one time and I do have a very high ANA titer, which is not indicative of inflammation, but an autoimmune disease.

This is the only board in this community where I feel uncomfortable and I think it is a shame. This community is for sharing information and that is exactly what I am doing. I know that Autoimmunity Research Foundation (run by Dr. Marshall) is doing a presentation in Portugal on autoimmune diseases.Anyhow, it is information and it is up to the members as to what they want to do with this information. I feel that any information is certainly worth looking at... especially when there are many success stories and research behind it.

[Quixotic1]

I have a suggestion.  I also agree that the repeated postings about the same alternative treatment for MS and other disorders is confusing to many of the members.  I also think people researching such things, and those who want to explore information that is currently considered "out of the mainsteam" should know that there are people who hold an ENTIRELY different view of the cause and the proper treatment of MS (and of other autoimmune disorders).

PlateleGal - While I understand your zeal for sharing a treatment protocol that you feel is helping you and others, you push the information in a somewhat intrusive manner.

You are welcome to post info truly where ever you like.  This is a public forum.  But, you have now been told by a couple members that, by changing the direction of the individual threads, you are causing confusion and derailing the chosen topic.  I suggest that you start a thread here of your own and give it a title that indicates you want to discuss an alternative treatment of and theory on Multiple Sclerosis.

That way people who are interested can speak to you directly, ask questions and you can share the information and the links with the people who are interested.  By posting daily, you can keep the thread on the first page.  You show that you have not read very deply on this forum if you feel that we lack an understanding of the severity and variations in CFS (or Fibro or many other disorders, for that matter).  This topic comes up frequently, as both of those and dozens of others may closely mimic MS.

I'm sorry you don't feel comfortable on this forum.  I hope that by modifying the manner in which you offer information we can change that, and you can reach the people who are interested in what you have to say.  As as always you can join in any discussion with posts appropriate to that discussion and invitations to read the thread that holds your views.

I hope this helps both sides of this need.

Quix

[PlateletGal]

Hi Quix,

I'm not trying to push anything on anyone. We had a discussion about vitamin D and Dr. Marshall's approach and then I mentioned the MP in another thread... that was it. And of course, in this thread because it is a treatment and one that has saved lives. In addition, more and more physicians are treating and recognizing the MP and I'm sure you will hear more about it in the future. I believe when you know something that can help someone else, it is your obligation to share that information and that is all I did.

So I'm finished... my intentions are good and wish you all the best.

[Heather3418]

You are right, but we DO understand what you are trying to inform us of.  I am sorry that I have now made you feel uncomfortable on this forum.  Please understand that while you are sharing the information you have, you have many people including myself have even more doubt in our minds about the current treatment we are getting.

It would be very helpful if you go through alot of the posts on here and read what people are saying about the pain and torment they go through.  There is indeed PAIN from MS.  

CFS is also a horrible condition and I am in total empathy for what you endure.  I mean that from the bottom of my heart.  I am praying that the current protocol you are on, is going to lessen your debilatating discomfort. To even suggest that people with MS or those showing symptoms of MS should chaulk there problems up to CFS is incorrect.  That is what the majority of your posts have portrayed.

No one has ever claimed that MS is more disabling that CFS though.  No one!  We here on the forum NEVER minimize anyone's pain and what they go through.  We offer support.      

I have had a diagnosis of MS and Fibro for over 12 years.  I know all too well the severe pain that I suffer from.  As one of your posts stated, you cited that Dr. Bell (hope I got his name right) said that there was NOT muscle pain with MS.  Do you see how this kind of misinformation can be so confusing to someone that is literally wracked by pain?

This was the whole point of my previous post.  There were many areas of that Drs. article that were totally off base...just ask any person that deals with MS, day in and day out.  That man needs to spend a day in our shoes.  So as I said, this kind of information can make people that suffer from so much, that are diagnosed with MS or for those still in limbo land, even more uncomfortable.  I feel that misinformation should be corrected.

I sincerely DO wish you well and Happy Holidays,
Heather

P.S. A very HIGH ANA is not indicative of MS as it is in CFS and other disorders.

[PlateletGal]

Hi Heather,

I know... Dr. Bell's information was inaccurate on that one important part (pain). For all intents and purposes, I'm not trying to compare our illnesses. MS is a terrible disease. It is wild that CFS, lyme disease and fibro patients all have the same symptoms as people with autoimmune conditions. I believe we all fit into one category.. we all have a successive infection and a Th1 inflammatory disease. The reason why I posted in here is because I wanted to add my input on the vitamin D thread and mention the protocol that is restoring my health. I never thought that this type of healing was possible, but it truly is. It is totally given me another outlook on autoimmune conditions and healing.

Happy Holidays !

[Heather3418]

I raise my arms to our Creator that you are able to get the help you need for your CFS.  I totally sympathize (sp) with what you go through.  I am now saying that through tears.

Be well.

TO THE FORUM MEMBERS - I apologize to each and every one of you for getting "off topic."  I am SO SORRY.  I meant for this to be about MS treatments and what they entail.  I AM the one that should have started a "new thread."  

[essdipity]

I can only say that Quix's suggestion makes a lot of sense. If anyone wants to start a thread and discussion about alternative therapies they are more than welcome to do so. This thread is about traditional approaches, and is strictly about MS.

Plateletgal, why don't you do that? You may get an interesting discussion going. Chrisneedhelp, I'm sorry you feel called upon to attack some of our most knowledgeable and helpful members. We don't always agree about everything here, but we always agree to be polite. We don't use expressions like narrow-minded and closed-minded. That doesn't help anyone. If you have read this forum to any extent you know that the members here are supportive and positive. I hope you will decide that you can participate as one of us in a spirit of good will. No one has all the answers, after all.

ess

[Quixotic1]

Okay...let's all calm here.  Let's close this thread and repost all the information in two or more different threads.

The information that Heather was putting forth to the forum is the most accepted information by the established medical people in the field.

The information that Platelet Gal is offering is based on an entirely different theory of how the phenomenon that we call autoimmunity causes disease.  It is almost a diametric opposite in its views of the role of the body's immune system and what the proper treatments should be.

Thus, including both discussions in one thread is and will be totally confusing to all.  The science is largely the same, but the interpretations of the results diverge 180 degrees.  I understand both sides and I can't participate in a discussion of them both simultaneously without getting confused.  My post-doctorate work was in Immunology, so I do understand what I am saying.  Believe me when I say that what one side supports, the other group feels is completely wrong with regard to cause and treatment of MS.

Lets begin again.  I suggest that Heather repost the information and add the additional information in the title that this is the currently most accepted information.

I suggest that PlateletGal also begin a new thread and include the info that the MP is being used as an alternative therapy in MS; something like "The Marshall Protocol as an Alternative Treatment for MS."  I know many people would read it as we have had the request for alternative therapies many times.

People then have access to both bodies of information and can ask and post where they wish.  Most of all in this forum I want the information to be clear.  Debating them together is like debating the merits of two different religions.  Within the threads it is certainly appropriate for someone to ask how the two sides differ.  If this takes off on a new topic, it is again proper to start a new thread with that topic so people can enjoy a lively exchange of ideas - or debate if they wish.  Some people thrive on debate, while others are stressed and upset by it.  Why not keep it separate?

Please post nothing else here on this thread that involves an attack on anyone.  In general, I personally feel it is the right for the creator of a thread to express the opinion that the discussion has moved off topic or has become confusing or contentious.

Chris - using words like "ridiculous, clueless, narrow-minded, and stupid" is really unnecessary.  Your support for openness to ideas is welcome, but not the use of pejorative's is not.

Quix

[Heather3418]

This is an addendum to the previous statement about pregnancy and MS Modulating drugs..  This is very important information.. It SHOULD READ:  
  
The MS modulating drugs have not shown to damage the reproductive system or fetus.  This is strictly true, but the interferons, as a class, are powerful abortifactants.  That is they readily cause miscarriages at all stages of pregnancy.  So they do harm the fetus, not by causing malformations, but by terminating it.  The advice varies with each drug, but a woman should be off the interferon meds at least a month before trying to conceive.

[Heather3418]

This post - Part 1 and 2 are within the established MS field of accepted information.

[Momzilla]

PlateletGal and chrisneedshelp are BOTH friends of mine.  And if anyone ever gets off topic, you know its ME.  We can be talking about spasticity, and I get to talking about stiletto heels and Hot Legs!

All of us get pretty cranky with all the pain we're in all the time and the frustration of slow or no diagnoses or treatment.  Let's all just cool down and remember that this is the best forum on the World Wide Web and everyone is here to share information, ideas and most of all SUPPORT each other. That's how we've become who we are.

No hard feelings.  Let's stop here, as was suggested, and move along.  Go on, now....move along, everyone.  Nothing more to see.  All the blood is cleared away!  Let's start again!

Peace,

Zilla*

[Quixotic1]

PLEASE DO NOT POST FURTHER ON THIS THREAD.

We are asking that the topic of "Traditionally Accepted Treatments" start again on a new thread and that "The Marshall Protocol - An Alternative Theory and Treatment for MS" be discussed on a new thread also.

The theories behind these approaches are so radically different that any discussion that intermingles them is bound to end up in confusion.

Tnak you, Quix

PLEASE DO NOT POST FURTHER ON THIS THREAD.